Jane, this is particularly for you as you and Ben happen to be in the throes of the death with dignity conversation right now, but is also for everyone.... please, before anyone gives up, before you surrender to no hope, read this book:

"Could It Be B12?" by Sally Pacholok

Written by a nurse and her husband, an ER doc, it offers compelling evidence of just how many illnesses are actually B12 deficiencies. The nurse herself had a B12 deficiency, which went undiagnosed for a long time-she discovered it herself. True B12 deficiency is also called pernicious anemia.

Key points I learned, so far:

1. B12 is one of 13 vitamins the body needs to function properly, and the ONLY one that has a mineral component: cobalamin. You get this from animal protein (meat) .and our ability to absorb it decreases with age, even if healthy. Unlike some vitamins which the body can make from foods we eat, B12 must be obtained from food, probably because of the mineral cobalamin component.

B12 is needed for over 300 critical body functions, most of them relating to the nervous system.

Can't sleep? B12 is necessary to convert serotonin to melatonin, which helps us sleep soundly. Many here take melatonin for sleep.

2. regular blood tests (like the CBC or metabolic panels everyone uses) are useless for dxing a B12 deficiency because (1) they do not measure serum levels and (2) the "normal" ranges are far too low.

3. the symptoms of a B12 deficiency shares a HUGE number of PD symptoms, including MENTAL DECLINE, confusion, tremors, dizziness, rigidity, etc.

4. if the deficiency is corrected early (and "early" is relative for each person), many of the symptoms can be reversed...although some cannot, because some of the the damage from B12 deficiency is irreversible

5. the tests the book recommends for B12 deficiency are:

serum B12urine MMAhomocysteine (this is usually elevated in PWP, and is an indication of a B12 deficiency among other things)

6. you can supplement B12 many ways: OTC pills, OTC lozenges, shots, even a patch. B12 is CHEAP! If you take an OTC supplement by a pill, it must be taken on an empty stomach to be absorbed properly. If your loved one takes anything for heartburn, acid reflux, etc., that further reduces his ability to absorb B12 and he/she is likely low.

7. There are two forms of B12 you can supplement with : cyanocobalamin and methylcobolomin. The latter, methyl, is the preferred one to supplement with because it is the form the body uses directly, whereas the former form has to be converted by the body first. NOTE: if you take a multi-vitamin or folic acid/folate, it can mask a B12 deficiency. The author recommends a 7-day vitamin wash out phase if you do a B12 test so that you get a clean reading.

8. The book is full of horror stories from people who were incorrectly diagnosed for years: many have permanent damage. There have been lawsuits against doctors who did not dx a B12 deficiency in time/properly. Famous doctors and institutions have missed B12 deficiencies: one guy was told he had ALS after years of decline (including an episode in a mental hospital), only to learn years later that is was insufficient B12....after three months of intensive B12 supplementation by injections, he is normal again (although he cannot get life insurance now).

I had to order this book from Amazon. I have shared what I've read with my husband who is on board to try it, so....he is now taking an OTC Jarrow 5000mcg methylcobalamin on an empty stomach and we have had the above tests done, can't wait for the results. I will be surprised if he does not have a deficiency, using the higher normal ranges recommended in the book.

We did NOT go through our doctor for this for several reasons, and were able to use one of those walk in lab centers where you walk in, pay, test, and walk out. No script needed, but also no insurance taken, fyi.

Even if this does not "cure" our PD, I cannot help but think it will improve how he feels, and hopefully, sleeps. Whatever benefit, I will take it.

PS This seems a lot like what is going on with Vitamin D3-we are just now realizing that our "normal range" for this is far too low, and should be raised. When people test for D3 using the new range, the number of people deficient are almost epidemic. I think we are going to see the same thing happen with B12, especially in the elderly population, who typically eat less meat to begin with. Compound that with reduced intrinsic factor in their stomach acids because they are older, which is required to use the B12, and it is easy to understand why so many seniors are low in this critical vitamin. I could go on, but you all need to read the book. There is a thread on Neurotalk about B12 in the peripheral neuropathy section, here

Jane, it means he might want to consider getting B12 injections NOW! There are folks on the peripheral neuropathy forum who maintain a reading of 1000 and they are fine. I don't think anyone has ever established the highest B12 you can take with danger, it would be phenomenally high and you probably could not even get anyone to give you that much by injection. Where we go, they limit you to 1cc of B12 a week-if you need more, you need to get a doc involved.

I don't mean to give advice or tell anyone what to do, just that since B12 damage can be irreversible, time is not on your side if there is a deficiency.

It is critical to supplement regularly-we are taking 5000mcg daily on an empty stomach and have started the weekly B12 injections-already noticing subtle improvements which I'll post about later...have to get kids to school